Friday, December 31, 2010
Wednesday, December 29, 2010
Where has my baby gone? Maybe he can help me create an emergency plan so we'll be more prepared the next time we lose power!
Tuesday, December 28, 2010
Monday, December 27, 2010
Nate's sister Kylie and my dad and stepmom came to town to celebrate Christmas Eve and Day with us. Everyone was in place and unpacked by early afternoon on Christmas Eve and all boys were napped and fed. Perfect time for a fun Christmas activity! Cue the Christmas carols.
The decorating icing said that it dried in 4 minutes. Luke tested out truth in advertising by loading the cookie up with as much icing as he could. It dried! Luke took one bite of his cookie, though, before announcing that he was all done because the cookie was too sweet for him.
William got in on the fun by shaking green sugar crystals onto his cookie. Will wasn't too happy with decorating, though, because holding onto the container of crystals felt an awful lot like occupational therapy to him!
Luke and Grandpa took their decorating very seriously. Santa appreciated their valiant decorating efforts.
Aunt Kylie testing out the goods.
It doesn't matter that they're all ugly! This is pure delicious chaos! Santa got 2. The rest of them were gone in less than 8 hours.
Matthew was a little too young to partake in cookie decorating. He kept busy by looking cute in his Christmas shirt and drooling all over the Sullivan family crest that Grandpa and Grandmama brought back for him from Ireland!
Tuesday, December 21, 2010
Chris, Luke, Nate and Will play in the water table.
Though the water was a little cold, Matt enjoyed the water table too!
Will enjoyed the big fan and feeling the ribbons on his face.
Someone please tell me... WHO is that CUTE baby in the mirror? Matt checking out his good side.
Nate and Will check out some lizards.
Luke checks out his own lizard. Yick!
Jenn and Luke explore the jelly fish tank... happy that those guys are behind glass!
Luke showed no fear lying on a bed of nails! He then assisted the next 4 people in line with operating the table.
Matt really enjoyed playing with the wiffle ball being held up by an air flow. He could never quite grab it but that didn't stop him from trying.
Will hiding out in an Army camo tent - look out!
Luke, Matt, and I beat the pants off of Nate and Chris on this rigged tug-of-war game
Monday, December 20, 2010
The IEP is hard to develop in the first place because it requires you, the parent, to subject your child to a battery of developmental tests run by different types of specialists. When the crying is done and the testing complete, you listen to the areas in which your child needs additional development assistance and work with those specialists to create reachable goals for the year. And while completely necessary, it is painful. And as realistic as Nate and I are about Will and Luke's abilities, the IEP meetings are sad reminders of things we've been through, places we don't necessarily want to go back to, and how long the path forward really is.
On most days, I don't think about the IEP. I realize that it is a necessary way for educators in the field of special education to track a child's advances, and I don't pretend to have a better format. I just don't really like it, and I don't look forward to the quarterly IEP progress reports that we get in the place of report cards. Call me blind, call me ignorant, call me a dreamer. I call it survival.
Will's quarterly IEP review came today in his bag. Last quarter's review wasn't awful to read, and I was expecting the same type of report today because Will's daily teacher reports have been largely positive. And while there were some positive comments in the IEP...
"Will needs to improve his ability to self-regulate and respond appropriately to various sensory strategies designed to "calm" his system down in order to have a productive physical therapy session on days when he is having difficulties."
"Will continues to require hand over hand assistance for writing, this is largely due to his resistence to perform these tasks."
My fear is that if Will doesn't meet the goals that were set for him, then next year, his teachers will want to keep all the same goals that he didn't meet this year and not set any new ones that will push him. And the year after, and the year after... same goals. And then all of a sudden we're 5 years down the road, I'm still getting IEP reports about Will's inability to self-soothe when he gets upset during PT, and Will hasn't made any real progress.
Will is such a smart kid. The goals set were to try to enable him to shine, to develop, to manueuver his way out of the binds of his cerebral palsy one little step at a time. We, as his parents and educators, were tasked with figuring out the best way to enable his success.
I try to stay positive. I try to stay strong. But my first thought when reading these progress reports is to shrivel. Now, you know me... I don't shrivel. And I won't in this case. But sometimes the reality of this situation wears on me. Tomorrow I will be fine, and I will start to come up with ways that Will will beat the hell out of his IEP goals. But tonight... tonight I cry for my baby boy who is just tries so hard, beating so many odds with a smile of such true uncomplicated honest joy, and not knowing just how hard he's got to fight.
Thursday, December 16, 2010
Wednesday, December 15, 2010
Tuesday, December 14, 2010
The train was scheduled to depart from New Bonsal at exactly 11am. We knew that we had a 45 minute drive to get there. But despite all of our best efforts to leave early, we got out the door right around 10:15am. I figured that I could make up time on the highway... only it took forever just to get to the highway! We. Hit. Every. Single. Light. On. Creedmoor. Road. And remember what I said about avoiding the mall? Well of course we had to drive right by Crabtree Valley Mall to get on the highway! Lots of Christmas shoppers driving into the mall around 10:30am, just two weeks before Christmas...
Thursday, December 9, 2010
I read somewhere recently that more and more kids are foregoing the crawling stage of life. Babies are spending less time on their stomachs than in previous generations because parents are putting them to sleep on their backs as a part of SIDS prevention. So babies go from being a baby blob to a sitter to a cruiser to a walker. No crawler.